by
Dr. Gregor Wolbring
Research Scientist
Department of Biochemistry and Molecular Biology
Faculty of Medicine
and
Adjunct Assistant Professor
Department of Community Rehabilitation and Disability Studies
Faculty of Education
University of Calgary
Canada
e-mail: gwolbrin@ucalgary.ca

&COPY; 2000 Gregor Wolbring.

This essay
is one in a series of essays meant to stimulate and inform discussion
on the subject. The author invites readers to correspond with
him directly if they have comments or questions about this essay.

published
with the help of grants from HKH Foundation, Funding Exchange,
C.S. Fund, and Foundation for Deep Ecology and research assistance
from Lisa Ferraro Parmalee (Senior Research Analyst, The Roper
Center), Elizabeth Abergel (York University), and Dr. Anne Leitch.

Introduction

Science and technology are not value neutral. Advances in science
and technology are often the results of human activity imbued
with intention and purpose and embodying the perspectives, purposes
and particular objectives of powerful social groups. Current
technologies do not equally benefit all segments off society
and are not meant to do so. To maximize public support for technological
developments and to minimize opposition, technology proponents
rarely acknowledge, for example, the distributional inequities
and ramifications of what they are proposing.

Throughout
history, science and technology have had profound impacts, positive
and negative, on human kind. The field of bio/genetechnology
research will be no different in this regard; it has the potential
to fundamentally alter society and to affect many, many people.
Bio/genetechnology has the potential to divide society into two
classes: the genetic positive (defect positive) and
the genetic negative . It also has the potential to prod us to
exchange a "right to be healthy" - the basis of universal
public healthcare coverage - for "no right to be unhealthy".

Thanks
to bio/genetechnology, whenever it is detected that a human being
is not measuring up to societal expectations, whether prior to
birth or after, the "offending" human being will have
his/her right to existence put at risk. Our propensity to judge
each other based on characteristics we attribute to each other,
fueled by the unraveling of the genetic code, will increase our
potential for intolerance of human characteristics viewed as
undesirable and preventable (especially if those characteristics
require accommodation by the majority of society).

The potential
for abuse of bio/genetechnology is immense and can easily outweigh
the positive points if we are not careful. To prevent the negative
impacts, safeguards should be put in place. It is of paramount
importance that scientists be vigilant in monitoring the use
of their results in any given society and stand up against unethical
use of their research results. Consumers must be enabled to monitor
and control the use of research results; they also must be involved
in the development of policies concerning which research should
be publicly funded and what safeguards are appropriate to prevent
the misuse of research results.

So far,
the debate about gene-technology has been very one-sided. The
consumer is not much involved in debate and policy-making concerning
the use of bio/genetechnology. And, for many of the most important
ethical issues stemming from the research (e.g. eugenic use of
bio/genetechnology), we don't have any societal safeguards in
place.

To me,
it seemed very timely when these issues came up in Budapest last
summer (June 26 - July 1, 1999), at the World Conference on Science
sponsored by UNESCO and ICSU (International Council of Scientific
Unions). Convened twenty years after the last such meeting, participants
at the Conference discussed, among other things, the future of
the natural sciences and the role of science in society. At the
end, delegates approved two policy papers: a declaration about
science and a framework for action.

In the
preamble of its Declaration on Science, the Conference noted:

1. We all
live on the same planet and are part of the biosphere. We have
come to recognize that we are in a situation of increasing interdependence,
and that our future is intrinsically linked to the preservation
of the global life-support systems and to the survival of all
forms of life. The nations and the scientists of the world are
called upon to acknowledge the urgency of using knowledge from
all fields of science in a responsible manner to address human
needs and aspirations without misusing this knowledge. We seek
active collaboration across all the fields of scientific endeavor,
i.e. the natural sciences such as the physical, earth and biological
sciences, the biomedical and engineering sciences, and the social
and human sciences.

2. While
the Framework for Action emphasizes the promises, the dynamism
but also the potential adverse effects that came with the natural
sciences, and the need to understand their impact on and relations
with society, the commitment to science, as well as the challenges
and the responsibilities set out in this Declaration, pertain
to all fields of the sciences. All cultures can contribute scientific
knowledge of universal value. The sciences should be at the service
of humanity as a whole, and should contribute to providing everyone
with a deeper understanding of nature and society, a better quality
of life and a sustainable and healthy environment for present
and future generations.

3. In addition
to their demonstrable benefits, the applications of scientific
advances and the development and expansion of human activity...
have contributed to social imbalance ...

4. Today,
whilst unprecedented advances in the sciences are foreseen, there
is need for a vigorous and informed democratic debate on the
production and use of scientific knowledge. The scientific community
and decision-makers should seek the strengthening of public trust
and support for science through such a debate. Greater interdisciplinary
efforts, involving both natural and social sciences, are a prerequisite
for dealing with ethical, social, cultural, environmental, gender,
economic and health issues.

5. Most
of the benefits of science are unevenly distributed, as a result
of structural asymmetries among countries, regions and social
groups, and between the sexes. . . . . .

8. . .
. In the twenty-first century science must become a shared asset
benefiting all peoples on a basis of solidarity, that science
is a powerful resource for understanding natural and social phenomena,
and that its role promises to be even greater in the future as
the growing complexity of the relationship between society and
the environment is better understood,

12. . .
.that scientific research is a major driving force in the field
of health and social care and that making further use of scientific
knowledge has great potential for improving the quality of health
for humankind, . . .

20. . .
.that some applications of science can be detrimental to individuals
and society, the environment and human health, possibly even
threatening the continuing existence of
the human species, . . .

22. . .
. that we recognize the need to practice and apply the sciences
in line with appropriate ethical requirements developed on the
basis of an enhanced public debate,

23. . .
. that the pursuit of science and use of scientific knowledge
should respect and maintain life in all its diversity, as well
as the life-support systems of our planet,

24. . .
. that there is a historical imbalance in the participation of
men and women in all science-related activities,

25. . .
. that there are barriers which have precluded the full participation
of other groups, of both sexes, including disabled people, indigenous
peoples and ethnic minorities, hereafter referred to as
"disadvantaged groups". . .

In this
paper I focus on those subgroups of the "disadvantaged"
often labeled "the disabled". However, many of the
points I raise are applicable to other disadvantaged groups,
such as women, indigenous peoples, and ethnic minorities.

The Natural
Sciences (biological/medical sciences) have enormous impact on
the lives of the disabled, as, for example, in the influence
those disciplines exert on public understanding of the meaning
of disability. (2) Yet, the disabled have little
impact on the Natural Sciences. They are virtually absent from
the decision-making process that shapes the directions and policies
of those sciences. They are not involved even in the bioethics
debates, debates which are supposed to examine the societal impacts
of the biological sciences and contribute to the decision-making
over whether and how to use the results of advances in biological/medical
sciences. In most countries, to be honest, there is very little
public debate at all about bioethical issues and very little
debate about the consequences of developments in biological/medical
sciences. The public still has little, if any, idea about the
broader scope of bioethical issues, about how the different issues
may be linked together, how they may be affected by the resolution
of those issues and how they might be able to protect themselves
from the results of those debates. Insofar as the disabled are
concerned, the bioethical debates of today are rather like the
debates of women's issues around the beginning of the century,
when men talked about women's health and graciously invited women
(who were not too radical) to join the debate.

Today,
even if we may talk about "disability" and discuss
what to do with the carriers of the characteristic (i.e., the
disabled), if we attempt to define "them" or reclassify
them or debate their personhood or develop ethical/societal/moral
frameworks that deal with them (and that may strip them of their
rights), generally we have ensured their absence from our conversations.
We usually justify our actions by saying that "they"
are not objective, not logical, and are instead too emotionally
involved. Clearly, this has to change. As in the debate about
women's issues, where women became the speakers and decided whom
they wanted to invite to the debate, in the same way, the groups
affected by the bioethics debates must become the ones to shape
the debate and name the participants in the discussion. And yet,
in most countries, people who are defined by their particular
"disability" continue to be ignored in the debate of
such bioethical issues as euthanasia and gene technology. The
euthanasia debate instead is shaped by the "right to die"
and "pro life" forces and by professional bioethicists.
The gene technology debate is shaped mostly by the medical profession
and biotechnology industry bioethicists and, to a lesser extent,
by bio/gene technology critics.

One of
my hopes for the 1999 World Conference on Science was that its
documents would reflect the above-described deficiencies and
call for action to mend those shortcomings. From the preamble
of its declaration on science, it appears that the goal was reached.
It is instructive to know how the goal was reached and to look
a little closer at what was achieved.

The
road leading to the conference

My journey
to the Conference started in 1998. I was invited to sit on an
Advisory Committee of the Canadian Commission for UNESCO convened
to comment on early versions of documents for the Conference.
Looking around the table at the first meeting, I saw indigenous
people, representatives for disability groups, one disabled person
(myself), people concerned about women's issues , people concerned
about how science might affect the environment/ sustainable development
/the arctic /energy issues. I saw people representing the Academy
of Science, the Royal Society of Canada, and the Natural Sciences
and Engineering Research Council of Canada (NSERC). I saw government
representatives from different departments and, of course, I
saw the people from the Canadian Commission for UNESCO.

I really
wasn't sure what to expect. I knew beforehand that whatever happened
in Budapest would not be legally binding on any government. Countries
would ignore what they didn't like. Nevertheless, I thought it
worthwhile to try to shape the documents of the Conference. While
a government might ignore a document , it might also use one.

Sitting
on the advisory committee allowed me to look at the Conference's
two policy papers at different stages of drafting. What quickly
became obvious was the lack of mention of disadvantaged groups
such as the disabled, ethnic minorities, and indigenous
peoples. The only group specifically mentioned in the draft text
was women; their lack of access to science was noted.

At every
stage of the consultations, I pointed out that all people should
have equal access to science. I noted that focusing on one characteristic
("female") implied that those who possess that characteristic
deserve greater recognition of their problems than people of
other characteristics facing similar problems. Granted, there
are unique aspects to the experience of women, but there are
also unique aspects of the experience of the disabled,
of indigenous peoples or of any ethnic minority.

Despite
some persistence, and I was persistent, every new draft still
had the same problem (although my comments were part of the Canadian
response to various drafts). While some country position papers
did look at women's access to science and some satellite meetings
before the Budapest Conference did examine the issue of Women
in Science, only the Canadian group looked at the issue of access
to science in terms of disabled people.

When I
heard that I was to be part of the official Canadian delegation
going to Budapest, I was stunned speechless (a rare condition
for me ). Members of the delegation included the president of
the Academy of Science, Royal Society of Canada; the president
of the National Research Council of Canada; the president of
the Natural Sciences and Engineering Research Council of Canada;
the Associate Secretary-General Ministry of Research, Science
and Technology, Government of Quebec; the Director, Division
of Investment, Science and Technology, Department of Foreign
Affairs and International Trades; a well known bioethicist; a
person representing indigenous people; women who had attended
the satellite meetings regarding Women in Science; and others.
Our delegation reflected a broad view of science. Later, when
I saw the other delegations to the Budapest meeting, it became
clear that the Canadian delegation was one of most diverse of
the group, if not the most diverse.

The
Conference

From the
outset, there were problems at the Conference. Some of those
problems might have been solved beforehand, had someone thought
about it. For example, the Conference session on biology and
health, assigned to the fourth floor of a building without an
elevator, could have been held in a wheelchair accessible venue.
There are some in Budapest. Apparently, the Conference organizers
did not expect the attendance of someone like me. I use a wheelchair.
Had there been delegates who were blind or deaf, they too would
have encountered problems. The Conference simply was not prepared
for national delegates or NGO (non-governmental organization)
representatives who were also members of the disability community
.

There were
other difficulties I could not help but notice, political difficulties.
From the beginning of the conference to the final drafting of
the documents, I found myself fighting with women fighting for
women's issues. The women were adamant about not having disadvantaged
groups other than women mentioned in the documents. Many of their
statements and the statistics they quoted did not include reference
to disabled women.

While it
is true that women were only 25-30 % of the delegates, which
is less than their percentage in society (45-55%), I was 1 of
1800 people at the Conference. I was the only one in attendance
voicing concerns of disabled people. (3) I was so busy trying
to prevent a discriminatory approach in the documents that I
never found time to look at the scientific issues of the Conference.
I am also a biochemist.

In the
end, I did not regret what came to be my focus at the Conference.
Issues pertinent to disadvantaged groups, including the disabled,
appeared in many places in the documents: (4)

Quoting
from sections of the Declaration on Science:

25. . .
. . that there are barriers which have precluded the full participation
of other groups, of both sexes, including disabled people, indigenous
peoples and ethnic minorities, hereafter referred to as "disadvantaged
groups". . .

34. Science
education, in the broad sense, without discrimination and encompassing
all levels and modalities is a fundamental prerequisite for democracy
and for ensuring sustainable development. In recent years, worldwide
measures have been undertaken to promote basic education for
all. Special attention is still required for marginalized groups.
It is more than ever necessary to develop and expand science
literacy in all cultures and sectors of society as well as reasoning
ability and skills and an appreciation of ethical values, so
as to improve public participation in decision-making related
to the application of new knowledge.

42. Equality
in access to science is not only a social and ethical requirement
for human development, but also a necessity for realizing the
full potential of scientific communities worldwide and for orienting
scientific progress towards meeting the needs of humankind. The
difficulties encountered by women, constituting over half of
the population in the world, in entering, pursuing and advancing
in a career in the sciences and in participating in decision-making
in science and technology should be addressed urgently. There
is an equally urgent need to address the difficulties faced by
disadvantaged groups which preclude their full and effective
participation.

Quoting
from the Science Agenda-Framework for Action:

17. Scientists,
research institutions and learned scientific societies and other
relevant non-governmental organizations should commit themselves
to increased international collaboration including exchange of
knowledge and expertise. Initiatives to facilitate access to
scientific information sources by scientists and institutions
in the developing countries should be especially encouraged and
supported. Initiatives to fully incorporate women scientists
and other disadvantaged groups from the South and North into
scientific networks should be implemented. In this context efforts
should be made to ensure that results of publicly funded research
will be made accessible.

59. Governments
should promote the further development or setting up of national
statistical services capable of providing sound data, disaggregated
by gender and disadvantaged groups, on science education and
R&D activities that are necessary for effective S&T policy-making.
Developing countries should be assisted in this respect by the
international community, using the technical expertise of UNESCO
and other international organizations.

79. The
full participation of disadvantaged groups in all aspects of
research activities, including the development of policy, also
needs to be ensured.

81. Governments
and educational institutions should identify and eliminate, from
the early learning stages on educational practices that have
a discriminatory effect, so as to increase the successful participation
in science of individuals from all sectors of society, including
disadvantaged groups.

91. Special
efforts also need to be made to ensure the full participation
of disadvantaged groups in science and technology, such efforts
to include:
- removing barriers in the education system;
- removing barriers in the research system;
- raising awareness of the contribution of these groups to science
and technology in order to
- overcome existing stereotypes;
- undertaking research, supported by the collection of data,
documenting constraints; monitoring , implementation and documenting
best practices;
- ensuring representation in policy-making bodies and forums.

Further,
there were many other sections of the documents which, I would
argue (and do so below in italics) , can be used by the disabled
to demand more inclusion. For example:

Quoting
from sections of the Declaration on Science:

33. Science
and technology should also be resolutely directed towards prospects
for better employment, improving competitiveness and social justice.
Investment in science and technology aimed both at these objectives
and at a better understanding and safeguarding of the planet's
natural resources base, biodiversity and life-support systems
must be increased. The objective should be a move towards sustainable
development strategies through the integration of economic, social,
cultural and environmental dimensions.

Here
are three phrases which include disabled people:

1) "Social
justice" cannot be attained without the involvement of disabled
people. We must be part of the discussion of whether eugenic
practices are consistent with social justice.
2) The concept of "biodiversity" most often is applied
to plants but, clearly, human beings are part of "biodiversity"
and "human beings" include all the varieties of us.
Every form expressing every characteristic of human being is
part of the planet's "biodiversity".
3) "Social and cultural ...dimensions" of course would
include disabled people. 39. The practice of scientific research
and the use of knowledge from that research should always aim
at the welfare of humankind, including the reduction of poverty,
be respectful of the dignity and rights of human beings, . .
.

Obviously,
the "welfare of humankind" has to also include the
welfare of disabled people and they are the only ones who can
say what is meant by their "welfare".

43. New
curricula, teaching methodologies and resources, taking into
account gender and cultural diversity, should be developed by
national education systems in response to changing educational
needs of societies.

Obviously,
disabled people are part of every culture and part of the cultural
diversity of a society. Their educational needs are also part
of the educational needs of society. Further, because the disabled
are so greatly affected by biological/medical research, Society
must recognize its own own educational need to learn how to deal
justly with disabled people.

Quoting
from sections of the Framework for Action:

14. Through
participatory mechanisms involving all relevant sectors and stakeholders,
Governments should identify the needs of the nation and give
priority to support of the public research needed to achieve
progress in the various fields, ensuring stable funding for the
purpose. Parliaments should adopt corresponding measures and
levels of budget appropriation.

Obviously,
disabled people are "stakeholders" and have to be involved
in the "participatory mechanism" that identify "needs".

32. Modern
scientific knowledge and traditional knowledge should be brought
closer together in interdisciplinary projects dealing with the
links between culture, environment and development in such areas
as the conservation of biological diversity, management of natural
resources, understanding of natural hazards and mitigation of
their impact. Local communities and other relevant players should
be involved in these projects. Individual scientists and the
scientific community have the responsibility to communicate in
popular language the scientific explanations of these issues
and the ways in which science can play a key role in addressing
them.

As already
discussed, "culture" and "biodiversity" imply
the involvement of disabled people.

46. Non-governmental
organizations should play an important role in the sharing of
experience in science teaching and education.

This,
together with the "social justice" called for earlier,
would mean the involvement of NGO's who represent disabled people.
One way in which NGOs could help would be to educate genetic
counselors and the medical profession about the non-medical side
of disability, about the personal and societal components of
disability. (The non-medical dimensions are already recognized
in the UN definition of disability, which defines disability
in social terms, not medical terms.)

56. Science
and technology policies should be implemented that explicitly
consider social relevance, peace, cultural diversity and gender
differences. Adequate participatory mechanisms should be instituted
to facilitate democratic debate on scientific policy choices.
Women should actively participate in the design of these policies.

As sections
25 of the Conference Declaration and 91 of the Framework clearly
indicate that disabled people should be part of the policy making
process, section 56 would include disabled people. They and their
concerns are part of Section 56's "cultural diversity"
and "social relevance".

58. Governments
should support graduate programs on science and technology policy
and social aspects of science. Training in legal and ethical
issues and regulations guiding international research and development
in strategic areas such as information and communication technologies,
biodiversity and biotechnology should be developed for scientists
and professionals concerned. Science managers and decision-makers
should have regular access to training and updating to cope with
the changing needs of modern society in the areas of science
and technology.

Again,
based on sections 25 and 91, this section should imply the involvement
of disabled people. The disabled can inform and enrich any ethical
training of scientists.

68. All
countries should encourage and support social science research
to better understand and manage the tensions characterizing the
relations between science and technology on the one hand, and
the different societies and their institutions on the other hand.
Transfer of technology should be accompanied by analysis of its
possible impact on populations and society.

That
implies the involvement of disabled people.

69. The
structure of educational institutions and the design of their
curricula should be made open and flexible so as to adjust to
the emerging needs of societies. Young scientists should be provided
with a knowledge and an understanding of social issues, and a
capacity to move outside their specific field of specialization.

Obviously,
disability is a "social issue" and one which has to
be addressed by society, addressed, according to sections 25
and 91, with the involvement of disabled people.

82. Every
effort should be made to eliminate open or covert discriminatory
practices in research activities. More flexible and permeable
structures should be set up to facilitate the access of young
scientists to careers in science. Measures aimed at attaining
social equity in all scientific and technological activities,
including working conditions, should be designed, implemented
and monitored.

This,
from the elimination of "discriminatory practices"
to "attaining social equity", has to include disabled
people.

90. Taking
into account the outcome of the six regional forums on women
and science sponsored by UNESCO, the Conference stresses that
special efforts should be made by governments, educational institutions,
scientific communities, non-governmental organizations and civil
society, with support from bilateral and international agencies,
to ensure the full participation of women and girls in all aspects
of science and technology, and to this effect to:
-promote within the education system the access of girls and
women to scientific education at all levels;
- improve conditions for recruitment, retention and advancement
in all fields of research;
- launch, in collaboration with UNESCO and UNIFEM, national,
regional and global campaigns to raise awareness of the contribution
of women to science and technology, in order to overcome existing
gender stereotypes among scientists, policy-makers and the community
at large;
- undertake research, supported by collection and analysis of
gender-disaggregated data, documenting constraints and progress
in expanding the role of women in science and technology;
- monitor the implementation and document best practices and
lessons learned through impact assessment and evaluations;
- ensure an appropriate representation of women in national,
regional and international policy and decision-making bodies
and forums;
- establish an international network of women scientists;
- continue to document the contributions of women in science
and technology.
-To sustain these initiatives governments should create appropriate
mechanisms, where these do not yet exist, to propose and monitor
introduction of the necessary policy changes in support of the
attainment of these goals.

Obviously,
the wording of this section is more focused on women, more elaborate,
and stronger than that of section 25 of the Declaration, but
is also in keeping with section 25. Certainly, if these are appropriate
measures for women, the same has to apply to all disadvantaged
people, including disabled people.

Finally,
just one more point. In paragraphs 8, 13, and 74 of the Framework,
there is mention of freedom of expression and opinion for scientists.

What is
the point of such a freedom unless we provide ways for the scientist,
including the scientist who is also disabled, to offer his/her
opinion in the first place?

Further
Considerations

The documents
of the Conference are not legally binding. It is now up to all
of us to use the documents in such a way that they achieve change.
It was always clear that the documents would not be radical papers
but they do mention many problems and they do state that women
and (other) disadvantaged groups should be involved in policy
making processes. That's a start and it's a quantum leap for
disabled people because for the first time THEY, as well as women,
indigenous people, and ethnic minorities, have an international
document which explicitly says that THEY should be part of the
policy-making process and should have equal access to science
and technology research and education.

Why is
this important? Why do disabled people or any other group need
access to the policy making process? Why Science? Why Bioethics?
Why should we care? Allow me a long digression to explain, using
as my example the justification of eugenic practices. I would
like to demonstrate how the exclusion of disabled people from
one bioethics/science policy debate has led to the disenfranchisement
of disabled people from the human/equality movement and the increased
perception of disability as a medical problem rather than a social
one.

Eugenics

First,
it is useful to clarify what is meant by "eugenics".
Eugenics is not associated with a cell, a zygote, an embryo,
a fetus, a person, or a human being. Eugenics is associated with
a characteristic of a cell, a zygote, an embryo, a fetus, a human
being. Someone decides , based on stated or unstated values,
which characteristics are worthy to be part of society and which
are not. The process implies discrimination. However, selection
is not necessarily based solely on genetic composition. For example,
elimination of a fetus believed to be exposed to thalidomide
is based on a phenotype.

There are
many ways to select or deselect the genotype/phenotype of one's
potential offspring or of living members of society: prefertilization
diagnostics, preimplantation diagnostics, prenatal testing, post
natal testing, in vitro fertilization, abortion, sperm banking,
egg banking, cloning, infanticide, fertilization, adoption or
mate selection.

Eugenics
occurs around the world because we discriminate against and seek
to eliminate unwanted characteristics from our midst. Today,
the nature and extent of the characteristics we can choose to
eliminate or selectively nurture is increasing with advancements
in genetic knowledge and procedures. Many procedures not intrinsically
eugenic can be used for eugenic purposes. For example, abortion
per se is not eugenic, but can be used in an eugenic fashion.

When we
examine eugenic practices, we have to answer four questions at
least:
1) Where do we draw the line in eugenic practices?
2) Can we draw a line in eugenic practices?
3) Are there such things as free choice and autonomy in eugenic
practices?
4) What is the impact of eugenic practices on human/equality
rights? Where do we draw the line? Can we draw a line?

The key
question is how does a society (engaging in social eugenics)
or a person (exercising personal eugenics) decide which characteristics
are permissible in offspring. Can a society influence or regulate
the decisions at any level? Is there a rational way to draw a
line between characteristics with such names as Tay-Sachs, Beta-Thalassemia,
sickle cell anemia, thalidomide, Alzheimer's, PKU, female, male,
gay, lesbian, bisexual, mental illness, cystic fibrosis, cerebral
palsy, spina bifida, achondroplasia (dwarfism), hemophilia, Down
Syndrome, coronary heart disease, osteoporosis, or obesity?

Tay-Sachs

The first
step in distinguishing among these characteristics would be to
see whether the genotype/ phenotype ensures a certain death after
birth. Tay-Sachs is often cited as an example to justify eugenic
measures because most people do not want to condemn a human being
to a slow, painful death. Eugenic measures can be employed on
two different levels: (a) on the level of the potential offspring
(in different stages of development), which would lead to selective
reimplantation, selective abortion or infanticide, and (b) on
the level of the gene carrier which would lead to testing of
parents, prevention of marriage and prevention of conception.
The choice of measures will depend on the cultural, societal,
moral, and religious background of the particular group using
eugenic measures. In Western countries the procedure is mostly
on the level of the potential offspring , but there are groups
where it works on the level of the carrier. (5)
Tay-Sachs is different than the other characteristics mentioned
earlier. Even when "treated", Tay-Sachs results in
certain death.

Beta-Thalassemia

In some
places, notably Sardinia and Cyprus, premarital blood tests for
Beta-Thalassemia (a blood condition leading to death in early
adolescence unless treated intensively) are widely applied. In
Cyprus, they are mandatory. Thalassemia is treatable, but the
procedure is very costly and has threatened to bankrupt the entire
health care system in both areas. Although "unfavorable"
test results do not prevent carriers from marrying each other,
people in Sardinia and Cyprus will nearly all follow a eugenic
follow-up procedure: 25% on the level of the carrier and 75%
on the level of the offspring . (6)

Beta-Thalassemia,
although treatable, still leads to eugenic decisions (social
and personal ) in countries whose health care system cannot afford
to provide treatment.

The availability
of affordable treatment and support is one factor in eugenic
decisions concerning the "carriers" of many genotypes/phenotypes,
e.g. cystic fibrosis, hemophilia, insulin-dependent diabetes
and many others. Note that all of these conditions are deadly
if treatment is not provided. (7)

Down
Syndrome

Down Syndrome
is one of the all time favorite targets for eugenic elimination.
Between 80-95% of those mothers who learn that their baby might
have Down Syndrome choose to abort. (8)

Eugenic
practices in general often are justified by using the example
of preventing Down Syndrome (9).

What is
there to justify eugenic practices in the case of Down Syndrome?
It is not a terminal disorder. It does not necessarily require
costly medical treatment.

In the
case of Down Syndrome, eugenic decisions for the most part are
not made for medical reasons but for societal, educational, perceptual,
and conceptual reasons. In most countries, including Western
countries, Down Syndrome is viewed as a burden to society and
to the family. It is also believed that having Down Syndrome
ensures a low quality of life for the Down Syndrome individual
and his/her family. Western Societies use "quality of life"
and 'burden" arguments to justify their eugenic decisions
to eliminate many medicalized characteristics that
have come to be labeled as "disabilities". It seems
that as soon as we allow the use of quality of life/burden arguments,
no line can be drawn between the disabled who should
be eliminated and those who should not. (10)

If social
context, economic context, and personal and family circumstances
of the parents - and not the details of disability - are the
yardsticks by which eugenics decisions are made, can those same
yardsticks be used to judge other characteristics such as sexual
orientation and gender? (11,12)

There are
those eugenic decision-makers who would draw the line between
disability and gender (13) or between disability and sexual orientation.
Let us examine some of the arguments they make.

One argument
sometimes used to justify prohibiting choices based on gender
selection while allowing those based on disability selection
is that disabled people are a burden, women are not. This argument,
however, cannot fit those societies in which female offspring
are perceived as burdens. Indeed, the perception of "burden",
whether that burden is associated with gender or with disability,
is based on societal or familial circumstances. It is just not
true that the burden of a disability is intrinsic to the person
with the disability. In a caring and sharing society, most disabilities
will not be viewed as burdens.

Let us ask ourselves what constitutes a burden? Is it the dependency
of a person? Is it the need for emotional adjustments? Every
person will define burden differently. That which is not valued
will seem a burden. Burden engenders an expectation that a society
and individuals ought to do something that they don't see as
quite in their self-interest. To use the burden argument to insinuate
that the "burden" is inherent to those being designated
as having perceived burdensome characteristics is to engage in
an untenable distortion. The "burden" is in the eye
of the beholder.

Another
argument put forward to justify differences between gender and
disability selection (for eugenic "solutions") is that
we have to take into account the societal consequences of those
"conditions". This is code for saying that society
can afford disability selection but cannot afford gender selection
because gender selection might lead to an imbalance in the number
of males and females in the society. This argument has at least
two flaws:

1) If societal
consequences must to be taken into account, then we effectively
have a state-regulated eugenics program which would condemn choices
based on individual rights and reproductive freedom. Bill C-47
in essence would have made Canada a country with a societal,
government sponsored and encouraged eugenics program. The United
States already has such a program. (14)
2) The danger of gender imbalance may be imminent in countries
such as India but in Canada or the USA, the preference for males
over females is not so great as to make apparent a gender imbalance
in these countries.

Interestingly,
a Government of Canada paper accompanying Bill C. 47 defended
the prohibition of gender selection by saying (See endnote 13)
that it was "a) contrary to Canadian values of equality
and respect for human life and dignity and b) a form of sex discrimination".
These arguments, if valid, lead to discomforting conclusions:

1) They
suggest that "disability"-- by not being given the
same deference as "gender" -- does not allow those
who "have it" to partake of the benefits of equality
and respect for human life. Put another way, this means equal
protection under the law is not to be accorded the disabled.
2) The arguments further suggest that societal discrimination
is not to be equally applied among groups. By targeting "disability",
discrimination is institutionalized. Justification, using the
discrimination argument, of special protection based on gender,
only works if the decision of whether or not discrimination is
acceptable depends on the target of the discrimination.

Another
argument against gender selection as the basis for eugenics decisions
is that such selection lowers the status of women in general
and ". . . perpetuates the situation that gave rise to it".
Patricia Baird the head of the former Canadian Royal Commission
on New Reproductive Technologies often employed this argument.
This line of thinking easily leads us to the understanding that
if women (where they are the devalued sex) need special protection
due to their devaluation by society, then disabled people need
even more special protection (Most people would agree that disabled
people are even more devalued than women.).

Still another
argument, this one from (1999) Draft World Health Organization
(WHO) guidelines on bioethics, says Sex is not a disease.
Except for severe sex-linked genetic disorders, the use of genetic
services for the purpose of sex-selection is not acceptable.
" The problem with this argument is that rejecting gender-based
selection while accepting the screening out of gene-related disabilities,
we invite inconsistency and discrimination. Disability should
not be equated with disease.

Last but
not least is the argument of Joseph C. Fletcher: There
are three reasons why it is important to draw a moral line on
sex selection and stay behind it. The first is that gender is
not a genetic defect. . . Second, as noted by the Presidents
Commission (1983, p. 57), sex selection violates the principle
of equality between females and males and the attitude of unconditional
acceptance of a new child by parents, so psychologically crucial
to parenting. . . Third, sex selection is an unacceptable precedent
for genetic tinkering at parental whim with characteristics
that are unrelated to any disease." (15)

In response
to these reasons for discrimination, I note:
1) Not everything detectable is a defect. Being born without
legs is not necessarily a genetic phenomenon; it might be viewed
as a birth rarity but not a genetic defect per se. Because we
may find a gay gene, does this justify labeling "gay"
a defect ? Obviously, the rules for discrimination, if that is
what we want, have to be better drawn than simply putting gender-based
discrimination in one class and discrimination related to all
other potentially-perceived-as-negative characteristics in a
second class.
2) Any test for an unwanted characteristic abolishes the unconditional
acceptance of the child by the parent. Why only see that in relation
to gender?
3) Characteristics other than gender are unrelated to disease;
some of these characteristics may be suitable candidates for
parental tinkering. Being born without legs (because one's mother
used thalidomide) is not a disease; would we want to ban the
use of ultrasound to check for the condition?

Turning
next to the problem generated by eugenic selection based on sexual
orientation (if they ever find the gay gene), let us consider
what would happen if we were able to test for sexual orientation?

Increasingly,
people with various sexual orientations are making their orientations
public, sharing their view of themselves as simply having made
a different lifestyle choice regarding relationships and sex.
At the same time, society as a whole continues to harbor deep
resentment and uneasiness regarding these choices. Most parents
would rather have mainstream children when it comes to sexual
orientation. So it seems that societal prejudice and intolerance
will drive the use of a test for sexual orientation, not the
demand by the group targeted as burdensome.

In examining
the burden and suffering arguments for justifying sexual orientation
as a basis for discrimination, for the most part, you will not
hear from people with non-mainstream sexual orientations that
they are suffering because of their sexual orientation. You will
hear that they are suffering because of societal prejudice and
non-acceptance of their lifestyle. And you will hear much the
same thing from many disabled people. But if the prevention of
suffering is a valid reason for preventing the birth of children
with the characteristic associated with suffering, then testing
of fetuses will have to include testing not only for traditional
disabilities but also for sexual orientation. In determining
the scope of testing, what causes the suffering should be irrelevant
unless we are prepared to remove the causes of suffering. Until
and unless the causes (inflexibility of society to accommodate
differences) can be removed, deselection/ termination of the
fetus (with the undesirable characteristic) will seem the only
other option.

If we turn
to the burden argument vis-a-vis sexual orientation, we find
that many people view a child with non-mainstream sexual orientation
as a burden. Potential parents who have difficulty accepting
this characteristic, if they discern a way to avoid the perceived
burden, may choose to abort the fetus. (16) So if "burden"
is accepted as a viable argument for a eugenic solution, the
tests for sexual orientation will have to be added to the allowable
range of tests for those seeking an "acceptable" child
.

Many gay
activists do not agree with a test for being gay. (17) And many
bioethicists are opposed not only to the use and development
of a test for being gay but also to research targeted at finding
a gay gene. Schuelenk et al. write that, " research into
sexual orientation - simplistically referred to as 'gay gene'
research- is an example of research that provokes intense controversy.
. . But there are other reasons to worry about such research.
The very motivation for seeking an 'origin' of homosexuality
reveals homophobia. Moreover, such research may lead to prenatal
tests that claim to predict for homosexuality. For homosexual
people who live in countries with no legal protection these dangers
are particular dangerous". (18)

Applying
the reasoning of Schulenk et al to disability, we find that research
into the genetic origin of disabilities reveals disability-phobia.
And the dangers for disabled people is as real as the dangers
are for gay people.

Examining
the writings of Ed Stein, we encounter other insights and inconsistencies.
(19) Note: Stein used "sexual orientation" and related
words to fill the gaps I have indicated by ". . ."
in reviewing some of Stein's arguments.

Stein argues
that the availability of procedures to select . . . children
would contribute to discrimination and prejudice against. . .
and, more generally, undermine the maintenance of a just society.
Further, he notes, these effects carry significant weight in
determining whether genetic technologies should be developed
and whether their use is, or should be, legally permissible and
morally acceptable.

Stein further
notes that the claim that a parent is simply trying to protect
a child from the wrath of society's prejudice often is a rationalization
. . . The relevant point is that behind many of the preferences
for. . . children is a negative attitude towards. . . He goes
on to suggest that the emergence of . . . selection procedures
in cultures with negative attitudes towards . . . will reinforce
the preference for. . . children over. . . and further is likely
to encourage the view that . . . are not worthy of living . And
he adds that if the condition of . . . relative to . . . in a
society are poor and if the preference for . . . is quite strong,
legal recourse is necessary to protect. . .

Stein also
points out that there is a disanalogy between arguments made
against the permissibility of orientation selection procedures
and arguments against the permissibility of using genetic technology
to prevent the birth of babies with serious disorders. Such disorders,
he notes, may dramatically decrease life expectancy, cause great
suffering and intrinsically undermine a person's quality of life,
and be so distressing that a person with such a condition would
say she wishes she did not have this condition. Homosexuality
and bisexuality, he points out, are not like this. In particular
the primary negative features of being a lesbian, a gay man or
a bisexual have to do with societal attitudes towards their sexual
orientation not with intrinsic features of homosexuality and
bisexuality.

Ed Stein
used sexual orientation and related words to fill in the gaps
I have indicated by dots (. . .). But how can one justify filling
the dotted gaps with some characteristics and not with others.
Are not those gaps just as well-filled by words such as "disability"?
Stein tries to make the argument that sexual orientation is a
"problem" stemming from societal structures whereas
disability is a problem intrinsic to the person with the disability
(this is the traditional segregation between the medical and
social model of a characteristic). But is that true? Why should
gayness be accommodated by a societal adaptation model and disability
not? Further, if being gay is indeed related to a gene, how can
it not be intrinsic to the person? Stein claims that disabled
people would love to be not disabled but gays don't want to be
non-gay. Is that true? Many disabled people don't feel they would
be better off were they "normal" and many gay people
would rather not be gay.

From the
above it becomes clear how difficult, if not impossible, it is
to favor certain characteristics with exclusion from eugenic
"solutions" and not favor all of them. The dangers
are profound for those with any characteristic which is seen
as unacceptable. The fact that different characteristics will
be targeted in different countries does not argue for the correctness
of favoring some characteristics over others.

Are
there such things as free choice and autonomy?

Allow me
to remind you of some recent historical anecdotes, details, and
quotations:

1) Dr.
Margaret Thompson, Order of Canada member and former president
of the Genetics Society of Canada, said while a defense witness
for the Alberta government in the Leilani Muir sterilization
case, "some causes of mental effectiveness are hereditary
and when the eugenics board was created there was a real danger
of passing on those causes because contraceptive choices were
limited. Today, people at risk of inheriting or passing on a
defect to their children have the pill and other contraceptives
available. They can seek genetic counseling before a child is
born and can abort a child likely to be defective." (20)

2) Eike Kluge a professor of bioethics at the University of Victoria
and a member of the British Columbia government's Special Advisory
Committee on Ethical Issues, is cited as saying. "It can
be socially responsible not to bring a child into the world who
is fated to suffer terrible from a genetic disease." (21)

3) The
U. S. Nobel laureate Joshua Lederberg, one-time adviser to Cetus
Corporation, said in 1970 in testimony before the U.S. House
of Representatives that 25 percent of all hospital beds and institution
places are filled with patients whose illness was more or less
genetic in origin. He added that these numbers would increase
the genetic burden over time, just as environmental pollution
would increase over time. Therefore, he proposed as the most
important ad hoc action the advancement of prenatal diagnosis
combined with selective abortion. (22)

4) Francis
Crick, another Nobel laureate, said at the Ciba-Geigy Symposium
in London in 1962, "We have to take away from humans in
the long run their reproductive autonomy as the only way to guarantee
the advancement of mankind."(23)

5) Once
a fetus is diagnosed with trisomy, laws regarding abortion change.
Ordinarily the stage of fetal development is an essential factor
in deciding whether a woman carrying a healthy fetus can obtain
a legal abortion. In a pregnancy that involves a fetus with Down
Syndrome, however, women may obtain a therapeutic or medically
necessary abortion much later, even after viability. The intentional
termination of pregnancy for reasons of medical necessity is
called a therapeutic abortion. "Medically necessity"
has not been universally defined and so its meaning is left to
the discretion of individual physicians. Although the trimester
approach is the constitutional yardstick for when fetal rights
attach, legally unrestricted abortion of a fetus with "defects"
is allowed in several states in the USA as late as the second
and even the third trimester. (24)

6) Choice
is heavily circumscribed by cultural, social and economic pressures
and all these are powerfully against a women choosing to continue
with a pregnancy after "an abnormality" has been detected.
The British Abortion law enshrine this prejudice by not allowing
termination after 24 weeks unless a likely problem has been discovered.
(25)

7) A study
conducted by the Canadian Royal Commissions on New Reproductive
Technologies found that, as a result of pressure from hospital
staff, one in four pregnant women felt obliged to undergo amniocentesis.
Of those pregnant women whose fetus tested positive for a birth
defect, one in three believed she was more or less forced to
have an abortion. (26).

8) In 1993,
the Committee on Assessing Genetic Risks, Division of Health
Sciences Policy, at the Institute of Medicine, in the U.S. concluded,
"Some people with disabilities would resist any expansion
of genetic testing. The committee recognizes the weight of these
concerns and urges broad public education to dispel myths about
people with disabilities, genetic or otherwise, and to reduce
barriers to their participation in society. The committee rejects
the notion of restricting any expansion based on the concerns
of people with disabilities that the technologies are inherently
harmful. Such a restriction would undermine individual autonomy
as much as the view that people should be urged or forced to
use genetic tests and abortion to prevent disabilities. Nevertheless
the concerns of people with disabilities are critical ones for
our society. The committee is concerned that society may be moving
closer to adopting the view that people be urged or forced to
use genetic tests and abortion to prevent disabilities; steps
must be taken to counteract this tendency by decreasing pressures
to test and increasing education and understanding of disabilities.
If testing becomes widespread, efforts to urge people to undergo
genetic testing might engender a greater intolerance for persons
with disabilities even though most disabilities are not the result
of genetic causes. Avoiding the social pitfalls of intolerance
based on genetic testing will require continuing vigilance."(27)

9) The
same 1993 Committee on Assessing Genetic Risk cited above further
noted,"The potential for manipulation or control in the
direction of human reproduction is also implicit in genetic testing.
The public needs to understand that testing for genetic conditions
raises value judgments about what is normal versus what is abnormal--
and that the social and illegal acceptance of such judgments
can create the pressure for genetic conformity. The concept of
genetic conformity may not only result in disease prevention
but also produce an intolerance of ethnic and racial populations
"(28)

10) Testifying
before the U.S. Congress in spring of 1990, Arkansas state health
director Jocelyn Elders took an unusual tack in her defense of
legal abortion. "Abortion" she said "has had an
important and positive public health effect in that it has reduced
the number off children afflicted with severe defects".
As evidence, the future surgeon general of the U.S. cited this
statistic: the number of Down Syndrome infants in Washington
State in 1976 was 64 percent lower than it would have been without
legal abortion. (29)

11) In
recent decades, the public is fairly evenly split on the issue
of abortion, with about 54 percent opposing and 39-47 percent
advocating abortion. Public opinion is dramatically different,
however, when it is believed that the fetus will be born with
a defect. Even persons who otherwise describe themselves as pro-life
advocates may make an exception based on the health (normality)
of the fetus, as in the case of Down Syndrome. (30) In the case
of a fetus with Down syndrome, 78 percent believe that abortion
should be legal. (31)

12) Author
Laura Hershey asserts that, although prenatal testing appears
to empower women because it allows for reproductive choices,
it is actually asking women to ratify social prejudices. (32)

13) A 1995
Roper poll enquired about genetic testing that "may make
possible the early detection of certain inherited diseases...for
which there could be (emphasis added) treatment". Respondents
were asked whether they would "personally want to take such
a test". 75% said yes and 20% said no.

In another
question, pollsters referred to genetic testing that "may
make possible the early detection of certain inherited diseases...
for which there is no (emphasis added) treatment or cure"
and asked whether respondents would "personally want to
take such a test". 64% answered yes; 32% said no. (33)

14) In
their book on Ethics and Human Genetics, Dorothy Wertz and Joseph
Fletcher write, The main arguments for selective abortion
arises from: 1) the obligation to reduce suffering for the affected
family and the fetus when a serious and untreatable genetic disorder
has been diagnosed, and 2) the obligation to prevent genetic
disease and its impact on present society and future generations,
in the absence of effective genetic therapies. (34)

15) Philosopher
Philip Kitcher, in his book, The Lives to Come , (35) argues,
like Bob Williamson, (36) in favor of a voluntary, "laissez-faire
eugenics" in which families make their own decisions about
the kinds of children they wish to bear and rear. The concept
of "laissez-faire" eugenics" may lead us to think
that parents have autonomy and free choice but, in reality, do
they? In many countries, the first stumbling block to free choice
and autonomy is the affordability of the treatment. As is the
case in Cyprus and Sardinia, affordable treatment is not always
available. In such circumstances, who can blame a parent for
making the eugenic decision to avoid the sure death of their
child? If we want to talk about autonomy and free choice, we
have to make sure that treatments are available. In his vision
of voluntary eugenics, Kitcher presupposes a situation in which
everyone is well-educated about genetic disability and excellent
support exists for those with disabilities. In order to make
choices between alternatives, people need full and fair information
about the alternatives, and they need adequate social, cultural,
and financial support to act on several of the various alternatives.
These two conditions are not met, even in Western countries.
The realities of raising a disabled child are mostly negative,
not necessarily because of the child, but because the level of
social acceptance of most disabilities is low, and because economic
supports are eroding or lacking altogether. Predominant social
values in North America encourage having few children but making
each one a work of art.

16) At
a 1999 conference on fertility, world-renowned embryologist Bob
Edwards said that the increasing availability of pre-natal screening
for genetic disease makes parents morally responsible not to
give birth to disabled children. He noted that, "Soon it
will be a sin of parents to have a child that carries the heavy
burden of genetic disease. We are entering a world where we have
to consider the quality of our children." (37)

The many
quotations and incidents I have cited above reflect the general
cultural promotion of eugenics concepts, with disability being
the general target. The citations illustrate how women lose their
right of autonomy and their reproductive freedom. Direct coercion
of women threatens any semblance of voluntary eugenics. Women,
in many cases, have become the quality control gatekeepers for
societal expectations of human perfection. The concept of predictive
testing carries with it the concept of personal eugenics and,
in reality, introduces a shift to a concept of societal eugenics.
Thus we are moved towards a society in which the community/ the
government decides which people with what characteristics are
to be allowed to live and which are not. In such a society, we
may reject eugenic selection made on the basis of gender or sexual
orientation but we still consider as good both selection based
on perceived disability and the technology that makes such selection
possible. In such a society, we effectively abolish the principle
of free choice for women in regard to their pregnancy and substitute
in its stead the principle of societally-sanctioned (and societally
defined and limited) free choice.

The answer
to the question of whether eugenic practices allow free choice
and autonomy is No. Eugenic decision-making almost always occurs
in a social context.

Eugenics
and the interactions
among equality rights groups

It has
always been difficult to accommodate the views of different groups
in a movement. An equality rights movement which would integrate
and accommodate the views of women, indigenous peoples, gay/lesbian/
bisexual people, visible and ethnic minorities, and disabled
people - to mention just a few of the groups - is a movement
fraught with conflict of interests. Even within any one group,
the disabled, for example, fights erupt. The wheelchair user
and the blind person have different needs regarding curb cuts
and it is often not easy to come to agreement.

Conflicts
of interest occur between and within all groups. Until recently,
I would have described the interactions among various human rights
groups as either non-supportive or generally neutral in tone.
The groups were not often in conflict. However, with the recent
arrival of the genetic "revolution" and its promises,
the possibility for conflict is heightened. With the new gene
technologies, judgments we may have already made about each other
now imply attainable "solutions": elimination for the
negatively-judged characteristics and enhancement for the positively-judged
characteristics. And so now the various groups demanding human
rights - women, indigenous peoples, gay/lesbian/bisexual people,
visible and ethnic minorities, and disabled people - seem to
be in direct conflict, each questioning the value of the defining
characteristic represented by the other. Now, with judgments
of their "value" threatening their self esteem and
pride, not to mention the lives of their offspring, groups defined
by various "characteristics" begin to jockey for positions
from which to say that their characteristic should not be considered
part of this dimension of the genetic revolution.

Women's
rights advocates fought for a long time for their "reproductive
freedom", their autonomy of reproductive decision-making.
As long as that only meant the right to abortion, disabled people
were able to support it ( that is, if they as individuals did
not believe in the sanctity of human life). The right to abortion
per se, and for that matter belief in the sanctity of life, did
not target a specific characteristic of any one group. But then,
in response to the advancement of reproductive/ gene technology
(predictive testing), a second demand was added to the call for
abortion rights, namely the "right to know". Now, other
groups are threatened because the right to know implies that
judgment (and condemnation) are allowable on the basis of information.
If you know the fetus has Down Syndrome, you can make a certain
judgment and, in doing so, you also will alter the relations
between equality rights groups defined by these two characteristics,
notable "women" and people with "Down Syndrome".
(38)

In such
a situation, women still working to asset their own rights in
society become, perhaps unwittingly, the appointed guardians
of the quality and genetic composition of humanity as a whole.
Women thus may become tools for enforcing an analysis based on
a medical model of unwanted characteristics.

The disaster
goes further. With abortion and the "right to know",
women can terminate pregnancy on the basis of the sex of the
fetus. Being the watchdog of society can mean judging (and condemning)
those with their own characteristic ("female"). While
this situation might seem a remote possibility in Western countries,
it remains a possibility wherever women are devalued. (39) And
so, in part to eliminate this possibility altogether, there comes
a push to go one step further ; women demand that their characteristic
alone - i.e., "gender" - be excluded from the right
to know policy framework. Now the Animal Farm philosophy
has arrived and with it the messages that:
1) Some characteristics (e.g., "gender") are more worthy
than other characteristics (e.g., disability);
2) Deselection/termination by society based on some characteristics
(e.g., "disability") is acceptable but deselection/termination
based on other characteristics (e.g., "gender") is
not;
3) One group (of a certain "gender") is hindered by
a societal framework and another (the "disabled") is
hindered by its own intrinsic defects (genetic or
otherwise).

With these messages, we arrive at eugenic practices.

What
then is the impact of eugenic practices
on human/equality rights?

One major
consequence of eugenic practices is the emergence of an "Animal
Farm" philosophy: Some are more equal than others.

The specter
of eugenic practices tends to pit those with differing characteristics
against each other. A war of the characteristics begins. Who
will win and who will loose and what options are available to
solve the "problems", at least on the surface?

Three options
are obvious insofar as solutions to "problems" are
concerned: :
1.A eugenic solution (change at the genetic level)
2.A euthenic solution (change at the societal level)
3.A euphenic solution (change at the personal level)

Women who
denounce eugenic solutions for the "female" "problem"
in India still want to "solve" the "problem".
Eugenic solutions (getting rid of people or persons-to-be who
"have" the characteristic "female") is unacceptable
and so they advocate for euthenic solutions (change within the
environment in which women live), to make society more accepting
of women. Gays also denounce eugenic "solutions" for
"gayness" and instead opt for euthenic solutions. For
many gays, the suggestion of euphenic solutions (to cure them
of being gay), is offensive and untenable since to them being
gay is part of who they are. To "fix" them demonstrates
a disregard for them as they are. Deaf people, blind people,
and dwarves often reason in a manner similar to gays, finding
both eugenic and euphenic solutions unacceptable.

For years,
people who were labeled as "disabled" have fought for
the use of a social model of disability in which disability is
understood in terms of societal attitudes and the environment
in which they live. This would seem to call for euthenic solutions.
But in reality, in most countries, disabilities are understood
within the medical model, which allows only for eugenic solutions.
Euphenic solutions are not available in most cases.

Eugenic
solutions and an emergent Animal Farm philosophy have many consequences.
They weaken the involvement in the human rights movement of those
whose characteristics are targeted for eugenic solutions. Once
pre-birth eugenic solutions are established for those with targeted
characteristics, e.g. "disability", other consequences
follow for those living persons who already have the characteristic.
They cannot help but notice that their society, in order to deal
with their "problem", will have to establish - if it
has not already - such after-birth eugenic procedures as infanticide,
DNR ("Do not resuscitate") and euthanasia.

Conclusion

The World
Conference of Science met in 1999 and discussed, in some cases
for the first time, many long-standing issues, including some
related to disability. If that Conference leads to an involvement
of disabled people in the policy making process, to increased
dialogue and mutual respect among disadvantaged groups (such
as women and the disability community), and to an end of the
Animal Farm philosophy (where some disadvantages are more equal
than others), then the conference was a success. If disabled
people now are to be heard in similar conferences, such as an
NGO (non-governmental organization) conference about science
and technology, planned in Stockholm for 2000, then this conference
was a success. If disabled people now are to have access to ethics
and policy making boards, if their voices now are to be taken
seriously, then this conference was a success.

Such successes
as these would not only be victories for the disability community
but, given the many valid points, valuable perspectives, and
intelligent, talented people the disability community can bring
to the bioethical, medical, and scientific debates, they would
be victories for us all. With no convincing arguments to point
the way to an acceptable line regarding the use of predictive
tests and eugenic solutions, a much more thorough debate is needed,
with all the parties involved. We haven't thought about any of
it very deeply yet. We need to, if only to avoid terrible errors.
The only protection we have available at the moment, the only
way to avoid tragedy, is to be a society which does not view
any human characteristic as a disaster, whether it be not having
legs or having some other disability or being gay or being female.
We need to have a place for every one and to support each other.
We need to terminate the Animal Farm philosophy ; it can only
lead to a bloodbath within the equality/human rights movement.
We cannot work with each other when some view themselves as superior
to others. The society we create is our only protection against
the "gene-ism" (as in racism, sexism and able-ism)
that in the end, we are told, will make targets of 60% of us
all. (40)

Endnotes:

(1) According
to a 1995 New Zealand report, "New Zealand genetic disorders
whilst individually rare constitute a significant contribution
to morbidity and mortality when taken together as a group. Two
to three percent of couples are at high and recurrent risk of
having a child with an inheritable disorder. 5 percent of the
overall population will develop a genetic disease by the age
of 25. If conditions with a genetic predisposition like diabetes,
coronary artery disease, cancer are included than it has been
estimated that about 60 percent of the population will be affected
doing their lifetime." See Dixon, J.K.,W. I. Winship and
D.R. Webster. 1995. Priorities for Genetic Services in New Zealand:
A report to the National Advisory Committee on core health and
disability support services. The Core Service Committee ( P.O.
Box 5013, Wellington, New Zealand). 11.

(2) In
essence, two philosophies collide here: the social model of disability
and the medical model. The social model acknowledges that the
lives of the disabled have value equal to that of the "abled",
that although impairment may cause the disabled pain and discomfort,
what really disables them as members of society is a socio-cultural
system which does not recognize their right to genuinely equal
treatment. In Western Europe, governments recently have begun
to acknowledge the social model of disability and to make some
efforts to better facilitate the full integration of disabled
people into their societies. For most of the world, however,
disability is still viewed as a medical problem. With that model,
the danger arises of the "new genetics" becoming the
new eugenics. And, with declining medical and social resources,
biological/medical solutions, such as deselection based on predictive
screening and euthanasia, become welcome and the need to improve
the social, economic, and cultural environment that faces the
"disabled" is never properly addressed.

(3) Disabled
people make up 10-30% of the population.

(4) See
<http://helix.nature.com/wcs/02-1g.html>.

(5) The
Dor Yeshorim program started in Brooklyn, New York, among Ashkenazi
Jews, is an example. See Wingerson, L. Unnatural Selection. Bantam
Books, 1998.

(6) Wertz,
D. C. 1998. What eugenics is and is not: some examples. The Gene
Letter 3: 2.
See <http://www.geneletter.org/0299/eugenicsis.htm>.

(7) Wrongful
birth/life litigation has been undertaken in the USA using the
argument that a family with a disabled child has special costs
related to the child. These costs the family cannot afford. Had
the parents known about the disability beforehand, such suits
contend, the parents would have aborted the fetus. Now, they
can only try to get the necessary money by suing the doctor and
others responsible for "wrongful birth". Still other
cases are being brought for "wrongful breech of warranty".
These (wrongful birth) cases which involve embryos which were
not properly tested for birth defects before implantation. See
<http://www.njatty.com/whatsnew/wrongbirth.html >.

(8) See
the Report of the Royal Commission on New Reproductive Technologies
Canada (1995); see also the comments of Lewis Holmes, Professor
of Pediatrics at Harvard Medical School working at Massachusetts
General Hospital, reported in Glover, N.M. and S. J. Glover.
1996. Ethical and legal issue regarding elective abortion of
fetuses with Down Syndrome. Mental Retardation 34 (4): 207 -
214.

(9) In
1967 the American Medical Association passed a resolution endorsing
abortion in cases in which "an infant may be born with incapacitated
physical deformities or mental deficiency". A number of
states approved use of abortion for Down Syndrome years before
Roe v. Wade further paved the way for abortion to eliminate children
with mental defects, including Down Syndrome. In 1995, the American
College of Obstetricians and Gynecologists officially recommended
Down Syndrome screening for all pregnant women. Prenatal screening
is now effectively mandatory . See Glover and Glover. op. cit.

(10) At
a conference in Melbourne, Australia, on February 13, 1998, Bob
Williamson, director of the Murdoch Institute for Research into
Birth Defects in Melbourne and Professor of Medical Genetics
at the University of Melbourne, said: "We have to realize
that most people in my experience have fairly clear views on
what level of disability appears to them to be consistent with
a worthwhile outcome to themselves. I am actually irritated if
people say, everyone thinks that condition is so bad that we
should have prenatal diagnosis and termination of pregnancy but
condition Y (e.g., cleft palate) isn't bad enough. The truth
is you can't say that in terms of a condition, you can only say
it in terms of a woman, of her family, her perceptions, her social
context, her economic context and everything else. For some people
cleft palate will be something they will be at ease with, but
for other people it will not be. The same is true for Down syndrome.
We must avoid categorizing diseases as severe or not severe.
This can only be seen in the context of the overall holistic
situation of a family and individuals. " (from an unpublished
transcript of his speech)

(11) Aaron
Greenberg, a Chicago lawyer who has published articles about
the legal and ethical issues of sexual orientation research,
said that if a so- called gay gene is ever isolated, parents
should have the right to abort a gay fetus or manipulate its
genetic makeup. He presented his arguments at the 16th Annual
Symposium of the San Francisco Gay and Lesbian Medical Association.
Timothy Murphy, a professor of medical humanities at the University
of Illinois College of Medicine and organizer of the Gay and
Lesbian Medical Association panel, said I think itd
be a terrible thing if we ended up foisting gay and lesbian kids
on parents who do not want them Both quoted in the San
Francisco Examiner, August 26, 1998. Available at: <http://www.sfgate.com/cgi-bin/article.cgi?file=/examiner/archive/1998/08/26/NEWS3525.dtl>.

(12) Women
in countries where women are devalued sometimes use these same
arguments (quality of life and burden) to justify their eugenic
decision-making related to gender. See Kusum. 1993.The Use of
Pre-natal Diagnostic Techniques for Sex Selection: The Indian
Scene. Bioethics 7(2/3):149-165; Bumiller, Elisabeth. 1990. May
You be the Mother of a Hundred Sons:A Journey among the Women
of India. Fawcett Columbine, New York ; and Miller, B. 1981.
The Endangered Sex: Neglect of Children in Rural North India.
Cornell University Press, Ithaca.

(13) In
the UK, in 1997, the British Medical Association condemned techniques
which can predict to a certainty of 90% the sex of the fetus.
The BMA said that it is unethical to assure a certain sex for
the fetus. The only exception they allowed was the case in which
a disease could be prevented. And they used haemophilia as an
example. See The Times (London). August 10. 1997.
In Bill C. 47 (1997), the Government of Canada proposed (in section
4h) prohibiting use of any medical procedure for the purpose
of ensuring or increasing the probability that a zygote or embryo
will be of particular sex except for reasons related to the health
of the zygote or embryo, and (in section 4i) use any diagnostic
procedure for the purpose of ascertaining the sex of a zygote
embryo or fetus except for reasons related to its health. Although
this bill was killed, another similar bill is already in the
making .

In "New reproductive and genetic technologies setting boundaries
enhancing health", Appendix A, a Government of Canada paper
accompanying Bill C. 47, prohibition of gender selection is defended
by saying it is "a) contrary to Canadian value of equality
and respects for human life and dignity and b) a form of sex
discrimination". The notion of prohibiting gender selection
on the basis of Canadian values and unfair gender discrimination
was first put forward in a recommendation by the Canadian Royal
Commission Report on New Reproductive Technologies.

(16) James
Watson, a Nobel Laureate and first director of the Human Genome
Project, is on record as saying that a women should have the
right to abort if she doesn't want a gay child. See Macdonald,
V. Abort babies with gay genes, says Nobel winner. Sunday Telegraph
( February 16,1997). See Electronic Telegraph (Issue 632) at
<http://www.telegraph.co.uk:80/et?ac=001969769656593&rtmo=fMD3qoVs&atmo=99999999&pg=/et/97/2/16/nabort16.html>.

(17)Tasmanian
Gay and Lesbians Rights spokesman Rodney Croome noted that, "It
is as morally unacceptable to suggest the abortion of gay babies
as it is to say that Nazis were right to propose the
sterilization of so called inferior races." (See Australian
Associated Press 17 Feb. 1997.) The same argument can be made
for disability.

Compare
also the comments of Nick Partridge, chief executive of the Terrence
Higgins Trust, an Aids charity, in Macdonald, op. cit.: "It
is outrageous to suggest that there is a right for termination
because there is a possibility the child might be homosexual."

(25) The
International Sub-Committee of the British Coalition of Disabled
People (BCODP). 1999. The new genetics and disabled people: a
discussion document. Available at
<http://www.bcodp.org.uk/general/genetics.html>.

(31) Blendon,R.J.,
J.M. Benson, and K. Donelan. 1993. The public and the controversy
over abortion. Journal of the American Medical Association 270:
2871-2876.

(32) Hershey,
L. 1995. Choosing disability. Ms. Magazine 5: 26-32.

(33) Roper
Center for Public Opinion Research. Hart and Teeter Research
Companies. April 1995. Question ID# USNBCWSJ.4059.Q27B and USNBCWSJ.4059.Q27A.
In POLL database, on the worldwide web through Lexis-Nexis, Academic
Universe, or Dialog.

(38) Compare
the comments of Andrew Brown of Amnesty International regarding
testing for Down Syndrome, If society regards the presence
of such disease as an acceptable reason for aborting a fetus,
this makes it harder to preserve equality of respect for those
already born. One might argue that their human worth, if not
their human rights, have been diminished. Quoted in Amnesty's
latest fear: how our genes may determine our fate. 1998. The
Independent (February 18): 19.